Am I My Genes?

Confronting Fate and Family Secrets in the Age of Genetic Testing

Robert L. Klitzman, M.D.

Explores the experiences of individuals confronting genetic disease, and the full impact of this predicament on their lives - from issues of identity and fate, to those of reproductive choices.

Unlike prior studies in academic articles that have examined testing, disclosure, or reproduction separately, this book looks at these intertwined elements together.

Draws from in-depth interviews with individuals confronting genetic testing issues, to explore these realms as they arise in daily life.

Am I My Genes?

Confronting Fate and Family Secrets in the Age of Genetic Testing

Robert L. Klitzman, M.D.

Description

In the fifty years since DNA was discovered, we have seen extraordinary advances. For example, genetic testing has rapidly improved the diagnosis and treatment of diseases such as Huntington's, cystic fibrosis, breast cancer, and Alzheimer's. But with this new knowledge comes difficult decisions for countless people, who wrestle with fear about whether to get tested, and if so, what to do with the results.

Am I My Genes? shows how real individuals have confronted these issues in their daily lives. Robert L. Klitzman interviewed 64 people who faced Huntington's Disease, breast and ovarian cancer, or Alpha-1 antitrypsin deficiency. The book describes--often in the person's own words--how each has wrestled with the vast implications that genetics has for their lives and their families. Klitzman shows how these men and women struggle to make sense of their predicament and its causes. They confront a series of quandaries--whether to be tested; whether to disclose their genetic risks to parents, siblings, spouses, offspring, friends, doctors, insurers, employers, and schools; how to view and understand themselves and their genetics; what treatments, if any, to pursue; whether to have children, adopt, screen embryos, or abort; and whether to participate in genetic communities. In the face of these uncertainties, they have tried to understand these tests and probabilities, avoid fatalism, anxiety, despair, and discrimination, and find hope, meaning, and a sense of wholeness. Forced to wander through a wilderness of shifting sands, they chart paths that many others may eventually follow.

Klitzman captures here the voices of pioneers, some of the first to encounter the personal dilemmas introduced by modern genetics. Am I My Genes? is an invaluable account of their experience, one that will become all the more common in the coming years.

"An extraordinary exploration...probing the many roles and implications of genetics in our lives today.... Filled with astonishing insights, this riveting book is vital reading for us all."--Paula Zahn

"Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... An important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly."--Kay Redfield Jamison, author of An Unquiet Mind

"An illuminating voyage through the medical, familial and existential quandaries faced by those of us at genetic risk."--Thomas H. Murray, President and CEO, The Hastings Center

Am I My Genes?

Confronting Fate and Family Secrets in the Age of Genetic Testing

Robert L. Klitzman, M.D.

Author Information

Robert Klitzman is Professor of Clinical Psychiatry and the Director of the Masters of Bioethics Program at Columbia University. He co-founded and for five years co-directed the Columbia University Center for Bioethics, and is the Director of the Ethics and Policy Core of the HIV Center. He is the author of When Doctors Become Patients, A Year-long Night: Tales of a Medical Internship, In a House of Dreams and Glass: Becoming a Psychiatrist, and other works.

Am I My Genes?

Confronting Fate and Family Secrets in the Age of Genetic Testing

Robert L. Klitzman, M.D.

Reviews and Awards

In Am I My Genes?, the psychiatrist and ethicist Dr. Robert L. Klitzman plunges readers into the world of genomic medicine as it exists today: a barely mapped terrain of immense overlapping uncertainties...this book should make compelling reading for anyone considering genetic testing for these or any other conditions: It provides an instant community of fellow travelers along with a sophisticated moderator." -Abigail Zuger, M.D., New York Times

"Am I My Genes? should be required reading for students of genetic counseling--and for people facing the challenges of genomic health in their own lives." -- Michael A. Goldman, Science Magazine

"The greatest strength of the book is the detail and nuance it offers based on in-depth interviews andKlitzman's careful parsing of the different issues the interviewees face.... As Klitzman concedes, he has "raised more questions than [he has] wholly answered." But that is his goal: The American Journal of Bioethics

"The book provides a novel window into the world of regular people facing unprecedented problems in the new world of genetic technologies, and the author is correct in noting that we have a lot to learn from these pioneers." -- DOODY'S

Am I My Genes?

Confronting Fate and Family Secrets in the Age of Genetic Testing

Robert L. Klitzman, M.D.

From Our Blog

By Robert Klitzman 'It's like Star Wars,' a woman with the Huntington Disease mutation recently told me. This lethal gene had killed her relatives in every generation for hundreds of years, but she could now test her embryos to ensure that her children did not get it. 'I don't understand it all,' she told me, 'but the peace of mind is huge.'